Author: Gaynor Leech, Founder of L-W-O Community
Where on earth does one start writing about this year’s events. After hubby and I saw in the New Year at a lovely News Year Eves party how could we begin to imagine what lay ahead. On a personal family level hubby and I have had lots of ups and downs with our health. The last three months we have been supporting my brother-in-law and sister-in-law through the mire that is social care in the UK. A topic which I will be writing about in the New Year.
L-W-O Community - As a group we have now fully transitioned to being L-W-O Community. I had worked hard in 2019 at getting us recognised in my local community around Coventry and Warwickshire, so that we had reached the stage where we were being invited to local events to either to talk about lymphoedema or to take our information stand and be a part of bigger events. One by one each event was cancelled and although this was a huge disappointment, the new opportunities that came our way have been amazing. Our biggest asset from March on was that we had already established ourselves on social media therefore, we were not scrambling to catch up as we entered the new world of webinars, Microsoft teams and Zoom.
Support Group & Facebook Page – The support group has grown slowly, and we have a loyal, supportive membership. There are so many more lymphoedema support groups now than when I first started L-W-O in 2013. On our group for the most part the members have remained upbeat, but I am now detecting from their writing that mental health issues are beginning to rise. Fighting to get the correct compression has been an issue as is the lack of clinic appointments with qualified Lymphoedema Health Care Specialists. It is wearing to constantly battle against a system that does not understand what it is like to live with a long-term condition like lymphoedema. In an ideal world anyone living with lymphoedema would have supported self-care, but sadly this year for many this has not been possible. Therefore, this year we have continued with a self- care theme and with our countdown to Christmas our posters have not only supported self-care but included mindfulness.
Our Facebook page which is our public face was stagnant for a long time, but this year we have had a lot more organisations following us who have an interest in lymphoedema.
Family Group – Our online family support group started the year with 72 families and as of December 2020 we have 107 members. This is made up of 100 families and the rest are either Health Care Professionals (HCP’s), patient advocates or people with an interest in children living with lymphoedema. Changing the name from ‘Children’s’ to ‘Families’ in July 2020 has proved to be extremely popular. The family support group was established nearly four years ago. Although the family group has grown, for any Facebook group to thrive it must be driven by the members and sadly this group does not participate as much as we would hope.. In the New Year I will decide whether to continue with this group or call it a day and just concentrate on the new family website. The family website launched in July 2020 and was something I had been thinking about since January 2017 I guess the events of this year gave me the push, I needed to achieve this. The website is an ongoing project and like the rest of our community will grow. In addition to this Michelle who is our Twitter admin launched a family’s Twitter account which we both look forward to growing in 2021.
Twitter – I have made no secret of the fact that I do not get Twitter and although my interaction has improved, I still struggle. This year I thought it would be nice to hear from Michelle Donohoe our Twitter admin, passionate supporter of L-W-O Community, but also the personal support she gives to me is highly valued. Michelle has a great sense of humour that comes across in her posts and I am thrilled that the feedback that I get on our Twitter accounts is that Michelle is highly respected by cancer and lymphoedema followers alike. This is what Michelle has written about the L-W-O Twitterland:
“I feel lucky, a strange statement to make considering the year we have had, but I do. Monday to Friday I interact with some exceptionally talented knowledgeable people. This year has been strange for everyone but observing how all health professionals and various organisations have adapted has been inspiring.
The year’s first Twitter event is Lymphoedema Awareness Week in early March, it was slightly subdued compared to previous years but as the pandemic was gaining momentum that is no surprise. It is great to watch the buzz throughout the numerous Twitter feeds across the globe. There is a myriad of odd sock photographs from young and old as you are encouraged to #Sockit to lymphoedema!
Our Twitter feed has been able to join in with a couple of campaigns, #EveryBodyCan from the British Lymphoedema Society encouraging mobility and fitness for all and #Legsgetloud from the Legs Matter Team. We endeavour to use #SelfCare wherever possible and as we have the self-care queen founding LWO that is no surprise.
We follow almost 500 accounts and invariably read about the struggles people have with their lymphoedema, how difficult it can be to gain a diagnosis and unfortunately how many people are ignored or left without support from their healthcare professionals. This year has seen more awareness of the late effects of radiotherapy and one of LWO’s members shared their experience of the years they have spent trying to have this recognised. I am hoping the acknowledgement of this type of lymphoedema, often genital will increase. There are many health professionals striving to remove the stigma of this type of swelling, it would be great to see a hashtag or day of awareness to highlight and increase support. Perhaps a strange thing to be looking forward to I know!
This year LWO Community created an additional Twitter feed for the LWO4families website and support group, on the Twitter side this is a little quiet, but it is early days and I concede I do not spend as much time to it as I should. The momentum is growing, and I will offer a more focused feed for those who are interested and wish to follow. Caring for a child with a complicated condition can be isolating, thank goodness for the internet as it enables speedy access to information and connection to others with similar conditions.
I am in no doubt about the highlight of 2020 which was the response to the seventh year LWO anniversary, it was great to see messages of support for Gaynor’s work and see the Go Fund Me page total increase. Gaynor rarely stops working for the support group and Twitter is just a small cog in the machinery of our community. A big thanks to all who were able to contribute.
This year I have seen Gaynor pull out all the stops, creating content for the social media channels, start a lockdown blog, report from the BLS virtual conference and continue to raise awareness and provide practical advice. Well done Gaynor, I marvel at how much information and advice you can fit on to our fabulous graphics! I could go on but if you have got this far you deserve a break, a cup of tea or something more festive as I wish you a Merry Christmas and a Happy New Year!”
Author: Michelle Donohoe
Instagram – This year has not been the mystery it was 12 months ago which in part is thanks to my granddaughter Paris who came to teach me on several occasions on how to use it more effectively. Although like all social media if you are not constantly adding content then it quickly disappears from people’s minds. Instagram is important to our group because this is where the younger advocates and those living with lymphoedema frequent.
Financial – This is my biggest headache. I absolutely hate fundraising. The hours it takes to run L-W-O Community are incalculable and I do this happily. However, this year I have once again had to dip into my own pocket to run L-W-O Community. Nobody realises more than me how hard it is to donate to a group like ours. L-W-O has 3500 members, followers, and supporters, if every one of those donated £1 …
My priority has been to keep the websites and software up to date. Thankfully all the community cancellations because of C-19 meant I could cut costs by not buying stationery and apart from a couple of events early in the year there were no travel costs. In 2019 we had eight regular monthly donors we are now down to two. I am so grateful to those two that choose to donate this way they do provide much-needed security. We also have approximately 20 people who donate regularly once a year and without their donations L-W-O would not be able to provide the services we do.
Training – For those that have followed L-W-O from the beginning you will know that I am passionate about learning. In the early days it was all about understanding how the voluntary sector works, what was acceptable for L-W-O understanding legislation surrounding how a small group like ours operates making sure that we displayed a degree of professionalism within our group. Protecting both myself and L-W-O’s members in the best way possible. It was extremely important to me that the Lymphoedema Community understood we were not here to step on anyone’s toes that L-W-O is a non-medical support group here to support those living with lymphoedema and all the challenges that brings.
This year many of the training events moved online and I am thankful to have been invited to attend many of them there are far too many to list here, but I have enjoyed each one I have attended. I joined the Eurodis Digital School, attended ILF Webinars and the recent webinar from CEmPaC (Centre for Empowering Patients and Communities) was educational and informative and shows what can be achieved if HCP’s and patients can work together in the interest of improving patient health and frustrations. My highlight has to be the virtual BLS Conference which was a big success, and the team organisers were amazing so well done to everyone involved.
Surprises – This year there were two radio interviews, a podcast interview and being asked to write articles for publication both in print and on other organisations websites. I was delighted to be invited to work with Mary Fickling of PhysioPod UK and I have had several articles published on the PhysioPod website. We are both hoping that this will continue through 2021. Mary has taught me so much about graphics and presentation and I highly value all the help and support she has given me and L-W-O this year.
My other highlight has been to work with Pernille Henriksen who is a passionate patient advocate and I am in awe of her commitment, energy and the amount of work she does on behalf of the lymphoedema community in Europe, the UK and the USA. Together we embarked on the joint project with other European countries to see if there was an Impact of the Covid-19 lockdown on European patients with lymphoedema. This was published by The British Lymphology Society (BLS) in their News & Views. I am sure I speak for Pernille as well as myself how thrilled we were to be supported and encouraged by BLS to publish our findings.
Just when I thought nothing could top all this, I was asked to do a video review of Gemma Levine’s book Aqua the proceeds of which are going to lymphoedema research.
Seven years – In September, this year L-W-O Community celebrated our seventh-year anniversary for our Facebook page and website. I was asked why I use the word ‘evolved’ in my writing, but that is exactly what L-W-O Community has done ‘developed gradually’. From the early days of no direction or skills to being reasonably tech savvy to reach those living and working in the lymphoedema community. The pathway is clearer with less brambles or thorns to claw at us or trip us up. Importantly from my personal point of view an acceptance by me that I have defined my role as a patient advocate. I look forward to 2021 to continue with our message that:
“Lymphoedema exists, we exist”.
